Thursday, November 27, 2008

Happy Thanksgiving

Just cause you have sarcoid doesn't mean you can't fry that turkey hard. Thanksgiving is a special holiday for me. Even though my Parents, uncles, aunts and grandparents are all from a foreign country the tradition remains all American. We truly embrace this holiday. To me it's just a great way to bring family and friends together. Sort of like Christmas only no gifts but better food. We had fried turkey once you do this fried you'll never have is any other way. Cranberry sauce, the Yam with the marshmallow casserole, Mashed potato, Corn on the cob, gravy, stuffing and wine lots of it. I'd thought I'd share something personal and cheery. Happy thanksgiving!

Nasal Blockage / Rocket snot

Before actually getting diagnosed two years ago, I had what a buddy of mine called rocket snot. It's hard mucus buildup, it's bloody and plentiful. I had so much mucus I would vomit just clear phlegm usually after eating. This is gross but after waking up every morning I would have to remove the nightly build up with my fingers or any other means necessary it was enough to fill a measuring cup with hard mucus I could have probably turned them into a projectile of some sort. After taking prednisone it all went away. I forgot about it. that is until I came to ween off prednisone and my nose started to get stuffed again. This time with softer mucus and not bloody, just major blockage and inflammation. I tried saline solution, nasal cleaning kits, creams and everything else they had at the pharmacy. On really bad days I really need sleep. I take a shot of afrin nasal spray and it works miracles. I try not to use the afrin because it can really do more damage than good. I know a lot of sarcoids out there have the same problem and some have even resorted to surgery to solve the problem. I'm really not sure what to do this really sucks mostly because it interrupts my sleep. I wake up with a dry mouth and blocked nose. 

Monday, November 24, 2008

Occupational Hazard, Postman with sarcoidosis

Here is the smoking gun sarcoidosis researchers have been waiting for. Another case of someone somehow becoming sick at work.

"Two studies in 1998 from the National Institute for Occupational Safety or NIOSH and Health, one in Tampa and one in an Omaha post office, reported no direct link between health concerns and postal dust. "

I guess they need people that are being funded to research sarcoidosis to go and conduct a study of those filters. That's part of the problem too, not enough funding.

This is important because the more these stories pop up the more attention, translate to more money for research and development of medicine and treatment. 

I'm not comparing this disease to cancer or aids but this is how those diseases got progress in treatment over the years, example less women die of breast cancer than 5 years ago due to better and more efficient screening. 

Friday, November 21, 2008

Watson 797!

5 Mgs of prednisone is what the doctor recommended. I talk to my doc every two weeks to a month. I had a quick conversation with him yesterday and after telling him my energy levels are good but from time to time I get these pains in my abdomen, that I think are lymph nodes in there going a bit nuts. I had a scan in that area not do long ago and that's what it showed. You know the c scan will show in a bright white glow all inflamed areas so my scan looked like a damned Christmas tree. He brought me down from the 10 Mg's to 7 and now I'm down to 5 which is like really, really low. I didn't ask him because I figured he's weaning me off. We talked about it before and I believe if this time I still "act up" when I try to ween off the stuff all together then it's time to try methotrexate. I hope it doesn't some to that but something tells me it will. He doesn't want me to be on preds for ever due to the danger's of long term effects. My doc really has my trust he's earned it, he's really got a lot of credibility with me. So 5 mgs till next month...

Thursday, November 20, 2008

Kveim-Siltzbach test

I had this test performed at Mt Sinai Medical center where the test was developed, it was not covered by my insurance and the test was optional. The doctor sticks a needle somewhere right under your skin. Similar to a TB test. A few weeks later, if something manifests itself on the site it is biopsied and can be definitively diagnosed sarcoidosis.

This is the biggest problem with this disease and others that lack funding. There are no standardize testings to confirm diagnoses and no screenings. I bet there are so many more people out there with sarcoids and even died from it and never got diagnosed.  Hopefully further studies will produce a more standardized testing for diagnoses of sarcoidosis. Right now the Kveim test if positive, a definitive diagnoses but if negative it doesn't mean you don't have sarcoidosis

This Wiki article does a really good job at explaining the pathology side look at the pictures titled Necrosis in granulomas
Also try this article The Kveim-Siltzbach Test 

Monday, November 17, 2008

Auto immune disease Bill HR 7078

Back on October 4th I wrote about the bill introduced by Patrick Kennedy that would allow more finding for research on auto immune diseases. I wrote my congressman asking for his support on this bill and, Well he wrote back...

Dear Mr. Rojo:

Thank you for sharing with me your personal experience
with autoimmune diseases and for contacting me in support of
H.R. 7078, the Prevention, Awareness, and Research of
Autoimmune Diseases Act of 2008. I appreciate hearing from you
and I welcome the opportunity to respond.

Like you, I believe that we must join together in the fight
against autoimmune diseases by supporting programs that increase
public awareness and research initiatives that focus on early
detection and treatment. Autoimmune diseases affect as many as
23.5 million Americans and encompass more than 100 interrelated
diseases, including lupus, multiple sclerosis, rheumatoid arthritis,
Sjogren's syndrome, polymyositis, pemphigus, myasthenia gravis,
Wegener's granulomatosis, psoriasis, celiac disease, autoimmune
platelet disorders, scleroderma, alopecia areata, vitiligo,
autoimmune thyroid disease, and sarcoidosis. According to the
National Institutes of Health (NIH), autoimmune diseases are
collectively one of the top 10 leading causes of death in women
under age 65 and account for at least $100 billion in annual direct
health care costs.

You may be pleased to learn that I am a strong supporter of
H.R. 7078, which was introduced by Congressman Patrick
Kennedy (D-RI) on September 25, 2008. If enacted, this legislation
would support public awareness initiatives, as well as efforts to
increase rates of early detection of certain autoimmune diseases.
Specifically, this legislation would focus on minority communities
that may be underserved or disproportionately affected by
autoimmune diseases. H.R. 7078 would call for research on
environmental triggers of these diseases, such as heavy metals,
phthalates, and pharmaceuticals, some of which are known to
"trigger" the initiation of autoimmune disease in genetically
predisposed individuals. Finally, this legislation would authorize
grants and institute a loan repayment program to support the
education of health care providers on potential links between
autoimmune diseases and cognitive and mood disorders, such as
depression. This legislation is currently pending before the House
Committee on Energy and Commerce. Please be assured that I will
keep our shared support for increased public awareness and
research of autoimmune diseases very much in mind as Congress
considers health issues.

Thank you again for contacting me. As your
Representative in the United States Congress, it is a privilege and
an honor to serve you and to act as your voice in Washington.
Please feel free to contact me again with any other issue or matter
that concerns you. You may also want to visit my website at where you can find out how I have voted
on legislation, learn which bills I have introduced and
cosponsored, and keep current with my latest Congressional
activities and policy statements.


Steven R. Rothman
Member of Congress

It's sort of a generic letter that I'm sure you can reuse to whoever inquired about his thoughts on the bill but I'll take it!
here is the letter I originally sent him in Oct

Thursday, November 13, 2008

Officer Down

As I search the new I find information on sarcoidosis cases and came across this one from last year of Police Officer James J. Godbee of the NYPD. My condolences goes out to his family as I can only imagine how hard this is for them. He he goes off to lend a hand in the rescue efforts after the 9/11 attacks in ground zero and he ends up with sarcoidosis. What they are writing is that he somehow got sarcoids after breathing in toxins from the site. He then has a heart attack 3 years later cause by complications from sarcoidosis. The family believes that he should be included among the death cause by the attacks and in essence they are right because had it not been for the attacks he would probably be on the job still today. I think this is a big smoking gun and I keep writing about the 9/11 connections to sarcoids. This is an opportunity being pass on because something in that toxic mix of dangerous dust cased sarcoidosis is many people some acute, some chronic. If we can find some sort of trigger then that would put scientists on the right path to find better treatment or perhaps even a cure.

Famous people with sarcoidosis *Updated 9/23/12*

Ok, I know this has been done before but I got a few new names that I wasn't aware of previously.

Bernie Mac   Comedian and actor
Karen Duffy   Former MTV VJ and Revlon Model
Bill Russell   Basketball legend
Reggie White   Football great
Van Ludwig Beethoven   Music composer
Tisha Campbell-Martin   Actress (remember her from the show Martin)
Evander Hollyfield   Boxing legend, very little info out there to support this one
Angie Stone    Singer
Travis Michael Holder   Actor, playwright and reviewer in the LA theatre scene
Daisy Fuentes   Former MTV VJ, Model & TV Host
Downtown Julie Brown   was the host of the dance show "Club MTV" from 1985-1992
Floyd Mayweather Sr.   Boxer, Boxer trainer, father of boxer Floyd Mayweather Jr.

*Thanks for the Tip Anonymous

William Shakespeare   is thought to have had sarcoidosis but it's not yet proven

only a few of these are actually confirmed
Anyone know of any more, holla!

*Also this is the most visited entry in the blog!

Friday, November 7, 2008

Beethoven What did you say?

It's pretty inspiring to think of people who had to overcome major obstacles in order to achieve their objections. Beethoven although deaf composed some of the most comprehensive melodically music known to mankind. Did the fact that he suffered from a systematic disease help him become successful? It is said the after Post diagnoses some doctors thought he has suffered from Sarcoidosis.  If it's true I think it shows the level of accomplishment one can have while dealing with a chronic disease. 

He is on of the articles supporting Beethoven having sarcoidosis

Makes you think really and I wonder how many people died of this disease and not even know or having been misdiagnosed. 

relating to this and why I ask if it sarc made him become successful is because it's my personal belief that the more you struggle the more prepared you are to go through walls to accomplish things. 

There is a saying by  Cuban poet and nationalist leader Jose Marti.

"Man needs to suffer. When he does not have real griefs he creates them. Griefs purify and prepare him."  

These words to me ring true. At first it seems like nonsense but when you really think about it it applies to a lot of cases and to sarcoid sufferers and not limited to sarcoid sufferers but what about cancer survivors? Those people I look up to.

Wednesday, November 5, 2008

Soul man on an oxygen tank

All the articles I have read up until now have said the Bernie Mac's sarcoidosis has been in remission. Look at what it says here, "Mac had an oxygen tank on set, to assist him with his sarcoidosis (a chronic tissue inflammation of the lungs), he would often joke around with the cast."

Here is the article

“Soul Men” Honors Mac, Hayes

Why was this not know before?

A Salute to Fangoria!

The folks over at Fangoria magazine are auctioning off unique props from the movie "Soul Men". Proceeds will Benefit the Entertainment Industry Foundation and The Bernie Mac Foundation which is his foundation to benefit sarcoidosis. BERNIE MAC FOUNDATION
I really applaud Fangoria for their efforts and it's a great way to create awareness.

I still love horror movies but not as much as I did when I was a kid. I limit my horror movies now to zombie flicks. I pretty much grew up on Fangoria magazine. Read the article here Tis the season… PREMIERE PROPS special holiday auction extravaganza

Sunday, November 2, 2008

How to deal with a Plaquenil Headache

I'm off the Hydroxchloroquine (plaquenil) now but when I started it I was told the side effects were minimal. I guess what my doc meant to say was that the side effects from plaquenil were not as dangerous as those of prednisone. When I started on the plaquenil the 2 side effects I had to deal with were gas, I farted like a madman. The whole house smelled like ass. Every time I would fart my wife would look at me, I'd be like it's the pills making me do this honey. The other was the terrible tension headaches you know the kind that starts on your shoulder and neck. Advil. Aspirin and Tylenol didn't work. I called my cousin who is a hot shot pharmacist in some university in Cali. His advice to me was to drink lot of caffeine in the morning with my aspirin or Tylenol. Or just take Excedrin because essentially that's what Excedrin was  acetaminophen (Tylenol),  aspirin, and caffeine. Well with 2 cups of coffee and a Tylenol I was able to sleep again and eventually the headaches and the gas went away after 2 months.

Sarcoidosis United

Sarcoidosis United
Sarcoidosis United